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October 5, 2009

End-of-Life Decisions in Dutch Neonatal Intensive Care Units

Author Affiliations

Author Affiliations: Department of Pediatrics (Drs Verhagen and Sauer and Ms Engels) and Department of Health Sciences, Section of Health Law (Drs Dorscheidt and Hubben), University Medical Centre Groningen, Groningen, the Netherlands.

Arch Pediatr Adolesc Med. 2009;163(10):895-901. doi:10.1001/archpediatrics.2009.166

Objective  To clarify the practice of end-of-life decision making in severely ill newborns.

Design  Retrospective descriptive study with face-to-face interviews.

Setting  The 10 neonatal intensive care units in the Netherlands from October 2005 to September 2006.

Patients  All 367 newborn infants who died in the first 2 months of life in Dutch neonatal intensive care units. Adequate documentation was available in 359 deaths.

Outcome Measures  Presence of end-of-life decisions, classification of deaths in 3 groups, and physicians' considerations leading to end-of-life decisions.

Results  An end-of-life decision preceded death in 95% of cases, and in 5% treatment was continued until death. Of all of the deaths, 58% were classified as having no chance of survival and 42% were stabilized newborns with poor prognoses. Withdrawal of life-sustaining therapy was the main mode of death in both groups. One case of deliberate ending of life was found. In 92% of newborns with poor prognoses, end-of-life decisions were based on patients' future quality of life and mainly concerned future suffering. Considerations regarding the infant's present state were made in 44% of infants.

Conclusions  Virtually all deaths in Dutch neonatal intensive care units are preceded by the decision to withdraw life-sustaining treatment and many decisions are based on future quality of life. The decision to deliberately end the life of a newborn may occur less frequently than was previously assumed.